Updated: Nov 18, 2019
5 days down!
I have been slacking on the updates here. We are embracing every moment with Noah before his big surgery, but attempting to sneak a few minutes of sleep in when we can.
July 30th, 2019: Day 1
Noahs Birthday! This was a very long day. We checked in to the hospital at 12:30 AM that morning after patiently waiting for way too long due to the hospital putting a hold on all inductions. (I will post separately about the birth and go in to details about this!)
We got the call to come in to the hospital at 12:15 and within 15 minutes we were there and ready.
I was 3 cm dilated when we checked in and my water broke around 3 am, then we had Noah at 11:35 AM. After he was born they had a team in the delivery room ready for an important procedure. During this 30-40 minute procedure, they inserted a UBC ( Umbilical Cord Line) to give him an important medicine to keep the PDA open prior to surgery. In most newborns this closes after birth on its own, but it’s crucial to Noah’s survival that this remains open.
After the procedure, I was able to get one more snuggle until they took him to the CVICU. Brandon went with him and the doctors and they began performing lots of tests. I had to let my epidural wear off, then recover for a few hours until I was able to go see him but just a couple hours later I wheeled my way to his room.
All of the CVICU rooms here at Texas Children’s have live in units. It no fancy apartment, but it keeps us close to Noah. I was still in recovery so Brandon stayed the first night here with Noah.
July 31st, 2019: Day 2
I got released from the hospital this morning and moved in to Noah’s room in the CVICU. Brandon and I were both exhausted from little sleep and all of the information coming at all times of the day. Every beep on the machines had us jumping in fear and asking questions. We were so happy to hear that Noah seems to be doing so well but were prepared that every day may bring us a challenge.
During morning rounds- when the team of doctors come in to talk about the plan of care, answer any questions, access Noah, etc. I asked if it was possible for me to breastfeed. Typically breastfeeding, or even feeding at all is not an option, especially before the surgery., They want to be able to monitor all of their fluid intake but also it’s hard for these babies, they get exhausted quick.
Bring prepared for a hard NO, the doctor told me that we could try it for 10 minutes every 3 hours, and see how handles it, but if his stats (respiratory rate mostly) was affected then we would need to stop. I started crying happy tears immediately! Feeding can be a huge issue for these kiddos since typically they are only tube fed.
The lactation specialist came in and Noah latched right away.
I got all moved in to Noahs room with Brandon. This was my first night in the CVICU, it’s an intense floor, that is non stop. Brandon changed his first poopy diaper EVER! There are always people coming in and out, alarms constantly sounding. We quickly learned what alarm fatigue is .. And Noah is still a newborn, so he was up and fussy quite a bit.
August 1st, 2019: Day 3
We had to put a stop to breastfeeding due to Noah’s respiratory rate but the fact we were able to do it at all, was a huge blessing and will hopefully set Noah up for success after his Norwood. Now, the problem is he doesn’t want to take a bottle at all so we have been trying to work on that. Otherwise he is getting his nutrients via IV, but mamma’s milk is always best for baby :)
This already has been a very emotional journey for Brandon and I. We loved Noah the moment we found out we were having him, but really never thought it was possible to feel the love we have for him now. We would do anything for him, including be the ones to go through this instead of him. It’s been heartbreaking to see everything he has already had to go through, and to sign consents every day on what ifs. It’s only been a couple days, but we couldn’t imagine life without him.
The day consists of rounds in the AM by the doctors, lots of pre op tests (blood work, X-rays, MRIs, to name a few), content check ins by cardiologists and other team members, occupational therapy, and more and more and more.
Noah got his first bath today- he absolutely hated it haha.. He is such a sweet boy, but mess with him while he is comfortable- he flips out.
Its been challenging to soothe him while he’s attached to 12+ leads and we are trying to find our balance on what we can and can’t do here. I know I need sleep but it’s hard to let the nurse step in when he is crying.
Since Noah is doing so well, they have allowed us to do a lot of “normal” things, such a skin to skin 1-2 times a day, bath time (with a cloth) and dressing him in his little socks and swaddles. But we are prepared for this to change after the big surgery.
As we watch his breathing continue to get faster, the doctors have let us know he will most likely need oxygen soon to help him not work as hard. They started giving him Lasik to help with fluid retention.
No sleep again but that’s the new norm around here.
August 2nd, 2019: Day 4
Each day we continue to ask when the surgery might be, we are dreading this day but we know it’s Noah’s life line. The date really depends on how he is doing, and scheduling These surgeries can be about 10 hours long.
As much as we are dreading this day, we are ready to get past this first big surgery and on the road to recovery. We have faith that God is watching over Noah and these doctors, and he has already given us so much to celebrate so far!
The previous findings in utero in addition to the Hypoplastic Left Heart, was an arrhythmia, decreased squeeze of the heart, and a moderately leaky valve. It was told over and over to us that we wouldn’t know everything until he was here and the tests since then have shown that he still does have a moderate leaky tricuspid valve, which it a little more complicated. BUT, the arrhythmia has not been seen thus far, and the squeeze of the heart seems to be normal now!
The doctors continue to tell us how happy they are with how he is doing do far which is really encouraging to hear.
We received a visit from the surgeon that will be doing Noah’s Norwood. The hearing about these surgeries, it’s incredible to think we have people that can this at all! Noah’s heart being the size of a grape, it’s mind blowing to think about.
The surgeon let us know that right now Noah’s surgery is scheduled for Wednesday. He walked us through what the day will look like, and explained that once he sees his heart and evaluates the leakage, he will decide whether or not he will attempt to repair the tricuspid valve or not. Hearing everything is a lot and B and I get emotional, but the team here reminds us that we are in the right place and doing everything we can for Baby Noah!
Tonight we attempted to get out of the hospital for a minute for the first time and grab some fresh clothes, but we we were both on edge the entire time and ready to get back to baby boy, so it was short lived! We know that eventually we will have to find a sustainable balance for the both of us, but self care might be on the back burner for a little bit longer as we figure this all out ;)
August 3rd, 2019: Day 5
Noah has his nights and days completely mixed. He has been sleeping SO peacefully all day but likes to stay up and party (aka cry) all night. Sounds like his dad! We are in awe that no oxygen has been needed yet, he continues to amaze us at how strong he is.
Today we worked on trying to keep him up, but he wasn’t having it! We had a few family members come in to town. Medically, it was an uneventful day which was nice, we rested throughout the day time in preparation for another sleepless night!
He did give us some awake time during the evening, we bathed him, changed diapers, and then told the nurse we were heading for a quick date night in the family room to have some dinner. My sister had brought us some home cooked food earlier that day, which was amazing since eating right now is sometimes easily forgotten about and hospital food is.. eh! Brandon and I are adjusting to this new normal, and even though it is so difficult, we wouldn’t be able to do it without each other.
We are counting each and every little victory and blessing each day and we thank you all so much for the prayers and support! Every moment we have with Noah is a pleasure.
We have met some amazing families dealing with HLHS here at TCH, and it helps us so much.
Please pray for Noah’s surgery Wednesday and that it goes as planned, with no surprises.